Complex PTSD, STAIR, Social Ecology and lessons learned from 9/11- a conversation with Dr. Marylene Cloitre

Dr. Marylene Cloitre is the Associate Director of Research of the National Center for PTSD Dissemination and Training Division and a research Professor of Psychiatry and Child and Adolescent Psychiatry at the New York University, Langone Medical Center in New York City. She is a recipient of several honors related to her service in New York City following 9-11 and was an advisory committee member for the National September 11 Memorial Museum. She has specific expertise in complex PTSD and for the development and dissemination of STAIR (Skills Training in Affective and Interpersonal Regulation), a psychological therapy designed to help survivors of trauma.

Dr. Jain: What exactly is complex PTSD?
Dr. Cloitre: Complex PTSD has a very long history, really pushed primarily by clinicians who looked at their patients and thought there’s something more going on here than PTSD.
In DSM-4, complex PTSD was recognized in the additional features where there is a mix of problems related to emotion regulation, self-concept and interpersonal relationships. After that, there was really no funding around investigating this further and the research for it has been spotty and it was sort of dying on the vine.

But with the development of a new version of ICD-11, there was an opportunity really to refresh consideration about complex PTSD. I was part of a work group that started in 2012, we looked at the literature and thought there seems to be enough data to support two different forms of PTSD , the classic fear circuitry disturbance and then this more general kind of disturbance in these three core areas of emotion regulation, self-concept and interpersonal relationships.

We proposed that there should be two distinct disorders: PTSD and complex PTSD and it looks like it’s been accepted and it will part of the ICD-11 coming out in the 2018.

Since the initial proposal, I’ve been working with many people, mostly Europeans, where ICD is more prominent than in the United States and there are now about nine published papers providing supporting evidence that these two distinct disorders.
Dr. Jain: Can you summarize in which ways they’re distinct? So on a clinical level what would you see in complex PTSD?

Dr. Cloitre: Mostly we’ve been looking at latent class analysis which is a newish kind of data analytic technique which looks at how people cluster together and you look at their symptom profile. There are a group of people who very distinctly have PTSD in terms of re-experiencing, avoidance and hyperarousal and then they’re fine on everything else. Then you have another group of people who have these problems as well as problems in these three other areas.And then there are another group of people who, despite exposure to trauma, do fairly well.

What we’ve been seeing are these three groups in clinical populations as well as in community populations and adults as well as in children.

Overall, these latent class analyses are really showing that people cluster together in very distinctly different ways. I think the important thing about this distinction is, what’s next? Perhaps there are different clinical interventions that we want to look at to maximize good outcome. Some people may do very well with exposure therapy. I would say the PTSD clustered folks will do very well and have optimal outcome because that’s all that bothers them. For the other folks, they have a lot of other problems that really contribute to their functional impairment.

For me as a clinician as well as a researcher, I’ve always been worried not so much about the diagnosis of the person in front of me but about how well they’re functioning in the world. What I have noticed is you can get rid of the PTSD symptoms, for people with complex PTSD, but they’re still very impaired.
My motivation for thinking about a different diagnosis and different treatment is to identify these other problems and then to provide interventions, that target these other problems, for the goal of improving our day to day life functioning. If you don’t have ability to relate well to people because you mistrust them or are highly avoidant or if you think poorly about yourself these are huge issues then we need to target these issues in treatment.
Dr. Jain Have you noticed that different types of trauma contribute to PTSD v complex PTSD?

Dr. Cloitre Yes, it does and it kind of makes sense that people who have had sustained and repeated trauma (e.g. multiple and sustained trauma doing childhood) are the ones who have complex PTSD.

Dr. Jain: Can you tell us a little bit about the fundamental philosophy that drove you to come up with STAIR and what evidence is there for it’s effectiveness?

Dr. Cloitre I came to develop STAIR as a result of paying attention to what my patients were telling me they wanted help with, that was the driving force. It wasn’t a theoretical model, it was that patients came and said,” I’m really having problems with my relationships and that’s what I need help with” or “I really have problems with my moods and I need help with that”.

So, I thought, why don’t we start there? That is why I developed STAIR and developed it as a sequence therapy while respecting the importance of getting into the trauma and doing exposure based work, I also wanted to engage the patient and respect their presented needs. That what it’s all about for me.
Overtime I saw a secondary benefit, that an improved sense of self and improved emotion regulation could actually impact the value of exposure therapy in a positive way.

In my mind, the real question is: What kind of treatments work best for whom? That is the question. There will be some people for whom going straight to exposure therapy is the most effective and efficient way to get them functioning and they’ll be happy with three or four sessions, just like some 9/11 survivors I saw. They only needed three or four sessions.

Other people might do better with combination therapies .

Dr. Jain The studies that you’ve done with STAIR can you summarize the populations you have used it for?

Dr. Cloitre: I began using STAIR + exposure with the population I thought would most need it which is people with histories of childhood abuse. In fact, our data show that the combination of skills training, plus exposure was significantly better than skills alone or exposure alone. So that’s very important. It also reduced dropout very significantly as compared to exposure, which is a continuing problem with exposure therapy especially for this population

Dr. Jain Can you speak to the social ecology/social bonds and PTSD, what the research world can tell us about the social dimensions of PTSD and how we can apply this to returning military members and veterans?

Dr. Cloitre: I think that social support is critical to the recovery of people who have been exposed to trauma and who are vulnerable to symptoms .We have enough studies showing that it’s the critical determinant of return to health.

I think we have done a very poor job of translating this observation into something meaningful for returning veterans. There is general attention that families are part of the solution and communities are part of the solution but it is vague –there isn’t really a sense of what are we going to do about it.

I think these wars (Afghanistan and Iraq) are very different than Vietnam, that’s where soldiers came back and they were called baby killers and had tomatoes and garbage thrown at them. You can really understand why a vulnerable person would spiral downwards into pretty significant PTSD and substance abuse.

I think we need to be more thoughtful and engage veterans in discussions about what’s most helpful in the reintegration progress, because there are probably really explicit things like, being welcomed home, but also very subtle things that we haven’t figured out about the experience.
I think on a community or family level, there’s a general awareness but we haven’t really gotten clear thinking or effective about what to do. I think that’s our next step. The parade and the welcome home signs are not enough.

I’ll give an example of what I witnessed after 9/11. The community around survivors feels awkward and doesn’t know what to do, so they start moving away. Combine this with the survivor who is sad or being irritable and so not the most attractive person to engage with. I say to patients sometimes, it’s a really unfair and unfortunate circumstance, that in a way, not only are you suffering but you’re also kind of responsible for making people around you comfortable with you.

I used to do STAIR because patients ask for it and also I thought,” oh well some people never had these social skills in the first place, which is why they are vulnerable with PTSD” but then I noticed that STAIR was useful for everybody with PTSD because I think the traumatized patient has an unfair burden to actually reach out to people in a process of re-engagement because the community and the family is confused. Others, strangers or say employers are scared. So they have to kind of compensate for the discomfort of others, which is asking a lot.

I think in our therapies we can say look, it’s not fair, but people feel uncomfortable around the veteran. They don’t know how to act and in a way you not only have to educate yourself about your circumstance but, in the end, educate others.

Dr. Jain Survivor perception of social support really matters. If you take a group of disaster survivors, we may feel well we’re doing this for them and we’re doing that for them but if the survivors, for whatever reason, don’t perceive it as being helpful it doesn’t matter. When I think about marginalized populations in our society, I don’t think to communicate to others about how to help you or how to support you is that simple.

Dr. Cloitre It’s very complicated because it is a dynamic. I think we need to talk to trauma survivors and understand what their needs are so that the community can respond effectively and be a match. Not everybody wants the same thing. That’s the real challenge. I think if survivors can be a little bit more compassionate, not only towards themselves for what they have been through but to others who are trying to communicate with them and failing.

Dr. Jain That can be hard to do when you’re hurting. The social ecology of PTSD is really important but it’s really complicated and we are not there, in terms of harnessing social ecology to improve lives.

Dr. Cloitre No. I think we’re just groping around in the dark, in a room that says the social ecology of PTSD is important. We don’t know how to translate that observation into actionable plans either in our individual therapies or in our family therapies and then in our community actions or policies.
But I do think that, in the individual therapy, recognizing the importance of trying to enhance perception of support where they’re real. Secondly, recognizing the burden that they have that’s unfair and try to enhance skills for communicating with people. Thirdly, having compassion for people who are out there who are trying to communicate but failing.
I have had a lot of patients who come, into therapy, and say,
” This is so ridiculous. They’re saying stupid things to me”.
And, I say,
“well at least they’re trying”
I think it’s important for the affected community to have the voice and take leadership, instead of people kind of smothering them with social support that they may or may not need.
Dr. Jain I know you’re a native New Yorker and you provided a lot of service to New York City following 9/11. Can you speak about that work? And in particular what I’m really interested in is that body of research that emerged after 9/11 because I feel like that has helped us understand so much about disaster related PTSD.

Dr. Cloitre We found out was most people are very resilient. We were able to get prevalence rates of PTSD following 9/11, that in of itself was very important. I think that’s the strongest research that came out.

I think on a social level it broke open awareness, in this country and maybe globally, about the impact of trauma and about PTSD because it came with very little shame or guilt.
Some people say what was so different about 9/11? Well, because it happened to the most powerful country and the most powerful city then if it could happen to them it could happen anywhere. That was the response, there was not this marginalization, ”Well this is a victim circumstance and it couldn’t happen to me and they must have done something to bring it on themselves”.
There was a hugely different response and that was so key to the shift in recognition of the diagnosis of PTSD which then led to more general research about it. I think that that was huge.
Before 9/11, I would say I do research in PTSD and people would say, what is that? Now I say I do research in PTSD, not a single person ever asks me what that is. I mean I’m sure they don’t really know what it is but they never looked confused. It’s a term that is now part and parcel of American society.
9/11 revolutionized the awareness of PTSD and also the acceptability of adverse effects, as a result of trauma. There was new knowledge gained and also just a transformation in awareness that was national and probably global because the impact it had and the ripple effects on another countries.
I think those are the two main things.
I don’t think it’s really done very much for our thinking about treatment. I think we continue to do some of our central treatments and we didn’t get too far in really advancing or diversifying.
For me personally, I learned a lot about the diversity of kinds of trauma survivors. Very different people, very different reactions.
I think probably the other important academic or scholarly advance, was in the recognition of this blend of loss and trauma and how they come together. That people’s responses to death ,under circumstances of unexpected and violent death, has also advanced. In fact now ICD-11 there will be a traumatic grief diagnosis, which I think has moved forward because of 9/11. That’s pretty big.

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Shaili Jain, MD serves as a psychiatrist at the Veterans Affairs Palo Alto Health Care System, is a researcher affiliated with the National Center for Posttraumatic Stress Disorder and a Clinical Associate Professor affiliated with the Department of Psychiatry and Behavioral Sciences at the Stanford University School of Medicine. Her medical essays and commentary have appeared in the New England Journal of Medicine, the Journal of the American Medical Association, public radio and elsewhere. The views expressed are those of the author and do not necessarily reflect the official policy or position of the Department of Veterans Affairs or the United States Government.

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